sinisterporpoise

I have encountered many treatment and diet suggestions that purportedly help with my condition. Usually people make these out of a place of concern. I will listen to them patiently. If I think the suggestion has merit, I may act upon it. If I do not have information, it means I will research it first. Failure to act immediately is not a judgment against someone trying to give me additional information. I am only exercising skepticism and trying to avoid the many snake oil scams that target people with certain conditions. If a suggestion has merit, I will do my own research. I may even try it, provided that the information does not contradict what I already know. Anyone who gives me this information should have some faith that I will reach out to them if I want their help managing my medical conditions.

Such advice often extends to dietary issues. People often latch on to the latest fad because they think it will improve their health. Gluten-free mania and the paleo diet are the best examples of this at the moment. Despite what some alternative health practitioners believe, removing gluten from the diet does not benefit fibromyalgia patients unless they also have celiac disease. This is also true for almost all autoimmune diseases, with one obvious exception. (I know there are a few other conditions that may require a person to cut out gluten, but I do not know what they are off-hand.) Until leaky gut has more scientific evidence behind it, should such a thing ever occur, I will remain skeptical. Believers put forth plausible-sounding theories, but I have not seen any research coming from academic sources that proves the existence of the condition.

People who have fibromyalgia and/or autoimmune conditions – other than celicac disease again – who have tried these methods and found that they work should not give them up. Such patients may experience the placebo effect or the nocebo effect. They may even have undiagnosed wheat allergies or celiac disease. I will not question their stories about how one of these diets worked for them as long as they do not insist that the same diet will work for me. (I’ve tried it. It didn’t do much. Besides, I had reasons *for* trying a gluten-free diet, reasons which include a doctor who just wrote my symptoms off as fibromyalgia before he ruled other conditions out.)

Politely thanking a concerned party and turning down their suggestion is not a rejection of the person. It only indicates that I have decided not to follow that person’s suggestion. I am likely to dismiss ideas that come across as pseudoscience. If the idea sounds plausible to me, I will ask for more information. Any person who has made it this far should avoid using phrases like “Google It.” The third party brought this information to me. By engaging in a conversation, I have already made the reasonable assumption that they want me to ask about their proposed solution.

I understand that the people closest to me and compassionate people worry about my health, particularly if they see me on high-pain days. Please make the assumption that I really am doing the best I can with the resources I have available. Unlike the concerned third party, I have to live in this body every day. This body is better than some and worse than others. Assume that I know what works for me and what does not. Do this and I will do my best to return the favor.